The resources for people with facial palsy are improving every day, which is wonderful news! I started this website several years ago and it’s been amazing all the people I have now met with facial palsy, if you consider that when I set up the website I had never met anyone else with the condition, apart from my Uncle Harry who had facial palsy after a stroke.
Here are some of my favourite resources:
Courage to Smile – this is a fabulous Facebook group for anyone affected by facial palsy regardless of cause, so you will find members with Bell’s palsy, facial palsy from birth, facial palsy after tumour removal and those with facial palsy due to many more different causes. If you want to join, make sure you check your ‘Other’ inbox for messages regularly because Rick Menser who runs the group vets everyone carefully to ensure people have a genuine reason to want to join. The good news is this makes it a really safe and private group, hence it is extremely popular and people post regularly, there are now 469 members and it is growing rapidly. The UK members try to arrange meet-ups once or twice a year, there is one later this week on Saturday 15th June in Manchester. There have been some meet-ups between US members as well.
The Facial Nerve Palsy website is another one I set up with help from members of Courage to Smile. There’s lots of information on this website, we tried to answer all those questions you don’t seem to get answers about from health professionals.
Since February I have been working for the new Facial Palsy UK charity, we get questions from all over the world because we are the only charity that provides condition-specific information and support to people with facial palsy due to any cause. The charity is still very new but we have lots of exciting plans. We are trying to get much-needed support groups set up around the UK, we already have ones in East Grinstead and Newcastle and hope to have a Manchester one starting shortly as well. There is a lot of work to do though and what I would ask is if you have benefited from either of my websites, this one and Facialnervepalsy.com, please would you consider making a donation to the charity? Even if it is a very small amount, every little helps. Thank you! The money does not come to me, it is used to help people with facial palsy and also we are trying to build up funds for research into better treatments for people with facial paralysis. The “everyone gets better from Bell’s palsy” assumption also really frustrates me, have a look at our latest press release to see what kind of message we are trying to get across about this.
Changing Faces is another fabulous UK charity and they have some great information about how to deal with other people’s reactions when you have a facial difference.
Even if you hate Facebook, don’t want to do Facebook, I would really recommend setting up an account even if just to access Courage to Smile. Just having a group of people who understand how it feels to have facial palsy makes a lot of difference.
The other thing we are trying to get off the ground with the charity is local fundraising groups. Personally I think this is a great excuse to meet up with others with facial palsy and have some fun. If you think this is something you might be interested in, there are more details here.
Well I think that’s about it for now, if you are in the Manchester area on Saturday 15th June and would like to meet up with some mad people with facial palsy then let me know, we always have a brilliant time! There’s something so therapeutic about being around others with wonky smiles, nobody hides away and we all have fun! The more the merrier!
A last request, if you do have Facebook, please can you like the charity’s Facebook page? I am personally responsible for this page and trying to raise awareness and get as many Likes as possible. I would be grateful if you could “Like” it for me, the charity page is here. If you prefer Twitter we’re here. Thank you so much! I really appreciate your help!